Isolation

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One thing parents who don't have a child with special needs don't realize is how isolating having one can be.

What I mean to say is, when you have a child that requires special attention, it can impact your social life very dramatically, to the point that you become isolated beyond what is normally experienced in typical child raising. Let me explain...

When our daughter was an infant, she was in most ways, just like any other infant. We fed her, changed her diaper, held her to comfort and sooth her... things that any parent does with their new baby.

But when our little girl reached the age of around 3, she did not gain the independence that kids without an intellectual disability typically do. Well, she did, physically, but she didn't have the common sense that usually keeps pace with the physical growth and development.

She often would run off in every direction, without the sense to realize that there may be dangers that come along with the decision to abandon parental supervision and safety. Again, "normal" children do this as well, but for a child with an intellectual disability, it seems the frequency and stress of this kind of thing is intensified. (As an aside, we used to joke that the "wandering" gene must be located on the 21st pair of chromosomes, and since in a person with Trisomy 21 this gene is over-expressed, the inclination for our child with Down Syndrome to wander was in full gear, all the time. But I digress…)

What my wife and I really found difficult was the extra supervision our daughter required, even up until age 10 (she wasn't completely potty trained till age 8!). This meant we were often excluded from the social situations typically enjoyed by our peers. A group of neighbours would get together for a barbecue and all be sitting around enjoying a beer and we'd get only a snippet of the conversation before we had to run off to keep our daughter from running down the street. Or we'd be trying to visit with friends after church on a Sunday, but could never really engage with others as we constantly wondered, "Where's Erin? What is she getting into? Who has her?"

Part of our grief as parents of a child with special needs, was that, longer than is typical for most parents, we experienced an "isolating effect". This was also marked by the fact that as the children of our peers aged, our daughter was less often invited, or able, to be a part of the activities commonly engaged in by young kids (riding a bike, sports, etc.).

So, I would encourage people, if you know of someone who has a child with special needs, consider how isolating the challenges of raising such a child can be, and make an extra effort to include them in any way you can with the things you enjoy, and perhaps take for granted.

That Time of Year Again

June is a wonderful time of year, due much in part to the graduations and other measures of accomplishment that happen for school students. Over the years, this time of year has typically aroused feelings of grief and sadness for me (read on). The post (after the jump) is actually a reprint from a post I made on my other blog 3 years ago (to the day, I just realized). So, again, I share a little of what my heart feels at these times.

Disciplining a Child With Down Syndrome

One of the issues my wife and I really struggled with in raising our daughter was in the area of discipline. Disciplining a child without an intellectual disability can challenge and exasperate any parent at times. Throw in the "DS factor", and you have a real challenge on your hands.

The question I kept asking myself over and over again, was, "is she getting it?" That is, does she understand what she is being disciplined for? With a "normal" child, you have a reasonably good chance that the kid will pick up on why he/she is being scolded, or punished for an unwanted action. But with a child with a mental delay, I always wondered, and second guessed myself, whether my child was putting two and two together. And so I was never really sure my disciplining efforts were, 1) called for, and 2) effective.

I remember a time when we were visiting my parents, and the subject of discipline came up. I recall my mom making the comment that my dad (AKA Grandpa), in observing how we disciplined our little girl, felt that we were entirely too harsh on her. I would have felt bad about this observation, except for the fact that my mom (AKA Grandma), entirely agreed with us, and felt that our measure of discipline was very much appropriate.

After 17 years, we look back on the whole adventure and think, our discipline was probably just about right. Our daughter has learned what is acceptable behaviour, and what is not. She has learned that she is safe and secure in our love, but also has a keen awareness of what will bring a scolding look or a corrective word when she is out of line. She is well behaved 95% of the time, which is more than I can say for her 2 siblings. We still work on them. But then again, they don't have the years of experience their sister has.

Am I Special?

So, as a father of a child with special needs, a question soon becomes apparent to me; am I special? Before long, after Erin was born, I began to realize that some people referred to me, (or was it just in my head?), as "Erin's father". Real or perceived, it was real to me.

Having a child with special needs soon made me aware that I was, in some way, special myself. Maybe it was all the people that sought to comfort me in saying that "God never gives a special child to an unspecial parent." A nice sentiment, but is it true?

I would never have thought of myself as special. I am an ordinary man. A plain man. A jerk, in many ways. I am not aware, to my knowledge, that any of the people who know me, refer to me as special. Yet I cannot deny, that, having been singled out to be a parent of a child that has the odds of 1 in 900 of being born, that I am in some way, special.

So, having been given the gift of a child of special needs, I will, as they say, rise to the occasion. My perception of who I am has not changed. I simply try to be the best father I can be, to the child God has given me. How can I not love her? How can I not seek to give her the best life she can have?

This is my calling, and in that, I guess, I am special.

A Little Background...

I know that many who are reading this blog will have known me and my parenting journey for some time, but I thought I would share a little of my personal background story for those that are new.

My wife and I were married in 1986 (yes, we recently celebrated our 25th wedding anniversary!) and after a few years of planned childless marriage, we began to try to start a family. After struggling with infertility for several years, we were overjoyed to learn in 1993 that we were expecting our first child.

About 24 weeks into the pregnancy however, a routine ultrasound revealed a serious abnormality - there was virtually no amniotic fluid in the womb. My wife was immediately followed up with daily prenatal assessments. As part of that process, a cordocentesis was done to see if there was an in utero virus responsible for the pregnancy complication. With that blood sample, they did a routine chromosome test, which told us that our unborn child had Down Syndrome.

Though this news devastated our hopes of having a "normal" child, we nonetheless continued to pray that God would save the life of our unborn child, and deliver her into our arms safely. And that's when, God began to do a miracle. Whereas up to that point the fetal assessments showed that she was dying in the womb, her status in follow-up assessments began to show a dramatic improvement.

In the end, Erin was born at full term, and besides having low birth weight, did not have any of the health problems the doctors predicted she could have based on the earlier pregnancy abnormalities.

Our experience with our daughter's gestation and birth taught us that we tend to put implicate faith in the medical profession. After we were given the news of our daughter's pre-birth diagnosis, we realized later that we had begun to grieve her loss. But as we began to hope again for whatever God had planned for her, and after she showed how she defied all odds against her survival, we understood that doctors have their limits of knowledge as well, and that each and every life is in God's hands.

In those weeks before Erin was born, and in the weeks, months and years following, our understanding of what is "normal", healthy, and beautiful, changed drastically. I will leave it to subsequent posts to share how Erin's entrance into our lives changed us, very much for the better. We continue to thank God for answering our prayers over 17 years ago, by giving us this special gift.